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My situation was that I thought the meds were unaffordable so I had to let my body do all the work. Unfortunately, my body was starting to fail in its pursuit to control the virus which led to a near breakdown in my health and wellbeing. Fortunately, someone told me that there was help to gain the meds thru the ADAPT program and I immediately search that program out to seek help.

• Did you wait until the current recommended treatment guidelines or take a more proactive approach?o No, I did not.• Did you wait until new/improved treatments came out?o No• Did the presence of any OIs affect your decision or did you base it on lab results or a combination?o OI? I was told by my doctor that I was in the danger zone of the viral load and that treatment was the best option.• If you started later, do you regret waiting too long?o No• How big a consideration was the financial aspect?o Very big, but I found a program that helped me out.• Did you ever get a second opinion or consult another doctor before starting?o No, I trusted my doctor and my instincts.• Were you recruited into a study (like START)o Yes, for cancer prevention• ...and any other factors that you used in making your decision.o Lost of weight, high anxiety, and stress

I don't really remember all that stuff. Big VL. CD4 counts were low (below 100) and I was riddled with thrush and other things.

My first combo was Stocrin/3TC/Tenofovir. The Stocrin made me fucking crazy. I hated that crap. But I remained on it until sometime in 2004, when I changed to something else and that didn't work and I went off medications for a few years.

Which wasn't real bright because by 2006 I had 15 CD4 cells and a VL so high they didn't bother telling me what it was.

I don't know about elsewhere but I think the definition of an AIDS diagnosis in Australia is the same today as it was in aught-three. Recommended guidelines and all that other boring shit don't really interest me so I don't recall what they were.

Denial, Denial, denial. I wasn't denying that HIV was the virus that causes Aids. I lost too many friends through the years, and knew better. I was denying the fact that I was getting sick. Of those 18 years, most of them were all in good health. I had 900 t-cells in 1999. After that year I became careless.

Denial, Denial, denial. I wasn't denying that HIV was the virus that causes Aids. I lost too many friends through the years, and knew better. I was denying the fact that I was getting sick. Of those 18 years, most of them were all in good health. I had 900 t-cells in 1999. After that year I became careless.

Ray

Do you mean careless in that you started to engage in riskier behaviors or careless in that you stopped getting checkups, seeking medical treatment etc? So between 1999 and 2003 your CD4 dropped from 990 to 16??? What happened exactly? Also, during this 18 year period, did you have any opportunistic infections? Were you ever hospitalized with a serious life threatening condition? I think we noobs can learn a lot from your case. if you had to do it over again would you have started HAART as soon as it was available?

I was diagnosed with AIDS 12 months after being diagnosed as HIV positive. I'd been infected for no more than 3 years.

MtD

I know this would just be a guess but why do you think your disease progressed so much faster than say J.R.E. who described being in good health for many years? It seems that some people get it hard and fast and some people progress very slowly. Other than good genetics, any idea why this is? I have been researching a lot but I haven't found a good answer to this.

So between 1999 and 2003 your CD4 dropped from 990 to 16??? What happened exactly?

Starting around 2001 fatigue became the biggest issue. I was sleeping more hours, and getting tired much more quickly. By early 2003, the fatigue was a very serious issue. By the end of 2002 and throughout 2003, the wasting started. And I lost approx, 30-35 pounds in 10 months.

Also, during this 18 year period, did you have any opportunistic infections? Were you ever hospitalized with a serious life threatening condition?

The only issue I had was Shingles in 1989, after that nothing. I was never hospitalized, until Sep 26th,03.

Only other issue I had , was hernia surgery, and that was on June 17th,02. I healed very quickly from that, but fatigue was still the main issue.

On July 16th,03 I had an upper endoscopy performed. That's when Esophageal thrush was discovered. I took Diflucan for that, and that was cleared.

Sep 26th , 03 I was hospitalized for 24 hours with Pneumonia, and released. I believe this was the time I was also given prednisone.

I started meds on October 24th,03. The regimen I started on was Viramune , epivir, and Zerit. The Zerit was changed within about a month and a half to Ziagen. I am still o the same regimen. For a while , I was also taking Viread ( Started viread around July or August of 2004. And stoped the Viread October of 09. Also between October of 03 to march or April of 04, I was on Trizivir, for about 3 weeks. I got off that quickly and went back to the other regimen.

I was also on Dapsone from October of 03 to 8/30/04. It took to 8/30/04 to get my t-cells about 200.

I took a "Home Access" test myself and found I was positive by phone in May 2008I immediately scheduled an appt. with the Immuno center at the county hospital. Positive with Oraquick. Western Blot confirmed positive two days later. I had blood drawn, returned to my doctor 1 week later. Numbers were CD4 511, Vl 47,000. To my surprise he recommended I start immediately with Atripla.His reasoning was that I was educated, motivated and would remain adherhent....very insightful doc...lol.Why wait.

I have no regrets. I am healthier now than 2 years ago. I exercize 6 days a week, have lost 20 lbs and can run a 21:30 5k...not bad for a guy almost 50.With all the studies showing concerns with immflamation and latent untreated HIV, I find no reason not to start early.

I won the genetic sweepstakes and my body was able to control the virus for over 15 years. I don't know exactly when I was infected but I found out in mid 94. I cd4s stayed around 500 but recently fell to 350 so it was time to start. After the Atripla trip out, I started Isentress & Truvada and have had a great 7 months with very little problems. Billy

I won the genetic sweepstakes and my body was able to control the virus for over 15 years. I don't know exactly when I was infected but I found out in mid 94. I cd4s stayed around 500 but recently fell to 350 so it was time to start. After the Atripla trip out, I started Isentress & Truvada and have had a great 7 months with very little problems. Billy

Fascinating, I may be a controller but its too early to tell. Suring this time what were your VL numbers?

Aside from good genes can you think of anything else that might have contributed to your slow progression? Were you eating a diet high in something (red meat)? Were you sleeping a lot at nights? did you have a very low stress lifestyle?

Where you taking any other supplements or pharmaceuticals, even ones not associated with HIV for example: (melatonin for sleep) or (Acyclovir for Herpes Simplex outbreaks) etc?

Do you have a list of your labs, I would love to see them, analyze how steady your numbers were.

Time before treatment is just one variable that plays into the decision, there are many others that are much more important, such as your CD4/VL, whether they are stable or declining, and of course how well or badly you feel. Everybody progresses differently so I don't see a lot of value in the poll.Also, it doesn't say what the starting point is. Time from infection ? Or diagnosis ?

I know this would just be a guess but why do you think your disease progressed so much faster than say J.R.E. who described being in good health for many years? It seems that some people get it hard and fast and some people progress very slowly. Other than good genetics, any idea why this is? I have been researching a lot but I haven't found a good answer to this.

In other words, what factors most affect disease progression?

I dunno. I've never really considered it at great length in a personal sense. Maybe I'm a Short Term Fast Progressor.

Fascinating, I may be a controller but its too early to tell. Suring this time what were your VL numbers?

Aside from good genes can you think of anything else that might have contributed to your slow progression? Were you eating a diet high in something (red meat)? Were you sleeping a lot at nights? did you have a very low stress lifestyle?

Where you taking any other supplements or pharmaceuticals, even ones not associated with HIV for example: (melatonin for sleep) or (Acyclovir for Herpes Simplex outbreaks) etc?

Do you have a list of your labs, I would love to see them, analyze how steady your numbers were.

What happened with Atripla?

I quit smoking when I found out that I was +. I also slowed way down on my drinking and have stopped now that my liver is filtering HIV medications. I have never taken any meds or supplements. No special diet for me. I have always eaten what I wanted but I have tried to eat correctly. One thing to note is that I very low cholesterol levels. My IDS commented on this early on. Over the years my VL bounced has between 2000 & 8500. The Aptipla (Sustiva) made me insane and anyone who has had the reaction knows what I am talking about. Billy

One of my best friends has gone 15 years without being on HIV meds -- seven of those years he had a hardcore meth habit. There's no rhyme or reason to this eternal question that appears on this forum. It is what it is.

For me personally I would have started meds right away regardless of my counts. Ofcourse I had no choice, but I was prepared either way. I read up on both sides of the argument, and I tend to think an untamed HIV virus would do more damage to my body than my medications would. I dunno Im a major newbie, and haven't been on the meds long enough to stop having side effects, but from someone who read A LOT of research that is how I was leaning.

Started the same day that I was diagnosed; about three weeks after being infected (and while still undergoing a very unfabulous seroconversion). I know it is not the norm, but I don't regret it one single minute.

Each person's experience is too unique and not really applicable to what others may be going through.

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"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

I was diagnosed with teh AIDS (~164 cd4) in 1993 and was probably infected in early 1988. They wanted me to pop AZT and ddI (videx) immediately, but I told them I didn't want any poison pills and trotted off to a get acupuncture. That lasted about 2 weeks and then I caved in with the pills and have never looked back.

I was diagnosed with HIV in 1993, and had the terrific luck to develop an AIDS-defining condition (pcp) by 1994. I was put on AZT, which was dosed at a relatively high level, so I basically felt like I had the flu for a year.

After a year, however, I said "screw that" and stopped. And luckily again, within the next year, the first generation of protease inhibitors came out. Dreadful things, especially the nasty first gen Viracept. It was not coated, was well nigh impossible to swallow, and caused intestinal distress to a level that mortified me daily.

Since then, I have experimented with almost ALL of the PI offerings, and thanks to web searches (such as this this) I managed to avoid drugs that cause lipo. My adherence was really hit-or-miss, mainly miss.

Right now I am on Isentress, Norvir booster, Prezista, and Truvada. I have chosen to take the Isentress once a day instead of twice, after hearing about the studies being done.

I really do think that much of my side-effects issues have simply been from overdosing on the drugs. Again, luckily, newer developments have inspired the drug companies to put out versions of the drugs that are better absorbed, and therefore have less unwanted effects.

I started my drugs because I felt I had no choice. Now I have choices, albeit not nearly as many as the newly diagnosed or drug naive.

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"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

I am of the belief that if one can afford it, it's best to start sooner. I asked to start treatment before my cd4 declines to 500. In the UK the govt pays for the drugs, in other countries they can be had for $150 per month for generic.

I don't think there will be any better treatment options for the next 5 years.

I had no symptoms or Ois.

So far I had no side-effects. I take a pill before going to sleep and had no issues. If I forget to take it at night and take it in the morning I feel very groggy whole day.

I consulted leading HIV practitioners in the field via email and they all said that they would personally start ASAP as long as they knew that they could afford treatment / keep taking it every day.

A large part of my decision to start treatment was making my viral load below detection, thus effectively not transmittable via vaginal/oral sex.

In 1985 there were no drugs to treat HIV. AZT was the first one I tried, in 1987 and I have been on some form of meds ever since. We didn't have all the tests or indicators and if not for clinical trials, I doubt I would still be here. I had access to the cutting edge drugs, of the time and I am sure that is why I survived. In a way, becoming poz back then, was so much easier than now. Back then, at least you had access to drugs. Today, with all these programs and waiting lists, it must be very scary to wonder how you can be assured of access to live saving drugs for decades.

I'm one of the lucky ones, in that I am also Canadian, so we live in Montreal and pay $75 per month for all of our drugs. Back in the States, our copays alone for Medicare Part D, were in excess of $8k before we moved from Florida. The thought that they can cut you off, from live saving drugs, by changing eligibility whenever they want, is no way to keep your stress levels down. Having to scramble every six months for benefits, is no way to live.

edited: I think you get comments in the thread that enlighten you. As for the poll, it is designed in a way that will lead to results of little use to a newly diagnosed person these days, about when to start treatment. Just saying. Do I need to explain why? If so, I'll try.

In a nutshell, time from infection to treatment is the key issue. Treatment is related to the need for treatment because of HIV progression. If someone was infected years before diagnosis, he/she may need treatment soon after diagnosis. That information can't show in the design of this poll, depending on how one interprets the question.

« Last Edit: September 17, 2010, 10:55:12 AM by mecch »

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“From each, according to his ability; to each, according to his need” 1875 K Marx

edited: I think you get comments in the thread that enlighten you. As for the poll, it is designed in a way that will lead to results of little use to a newly diagnosed person these days, about when to start treatment. Just saying. Do I need to explain why? If so, I'll try.

In a nutshell, time from infection to treatment is the key issue. Treatment is related to the need for treatment because of HIV progression. If someone was infected years before diagnosis, he/she may need treatment soon after diagnosis. That information can't show in the design of this poll, depending on how one interprets the question.

This is a very good point and I thought about it for 30 minutes before I made the poll however I could not come up with an unambiguous way to represent time from infection to treatment as many people do not know when they were infected (like you said).

Of course this can in itself lead to a good discussion as to the importance of universal access to testing and advocacy of programs that remove the fear and stigma associated with testing.

Anyway, if I asked it in the way you mention many people may not vote at all or would reply with a comment stating that they do not know their infection date and the discussion would not be as fruitful. So what I decided was to make a poll focusing on a limited metric, something specific that a poll can measure and that most people can participate in, the function of which is to open up the dialogue.

As you said, the real benefit here is the comments that responders of the poll. Their thinking. thought processes, considerations, rational as to when to start their own treatment. Hearing about these issues really opens up a dialogue and helps newly diagnosed people to start thinking about the big picture. I am a believer that the more information one has the better position they put themselves in to make a good decision. The poll is the first part, it draws participants in and encourages a discussion but the real gold is in the discussion itself... and so far so good.

All that having been said, the poll can show some interesting data. For example, right now over 37% of the responders have said they started treatment withing 6 months of less of getting a diagnosis. Although this does not reveal date of infection in relation to date of start of treatment it does reveal an attitude that once people realize they need treatment they seek it. Discussions like this one can help.

Finally, a follow up poll might address your concern: What if we take the comments from this poll, and select the 10 most reported reasons WHY people start treatment. Then allow posters to multi-select the top 3 or 5 reasons why they started treatment. This could potentially be very informative however in order to get an idea what the top 10 reasons are we need this preliminary poll to gather feedback.

How many of those 37% were at a point where they really had to start meds due to low CD4 or OI's? How many had very good numbers but decided to start due to wanting to hit hard and early or feeling tired, or had more illnesses they felt were due to HIV, and felt they should go ahead and start?

I look at those here who started meds right away even with good numbers. I wonder everyday what is best for me. We all have these questions--Am I allowing HIV to do more damage by not starting than any possibility of toxicity would do? For now, I have thought why start meds if my numbers are still decent. Why get into dealing with how to get the meds, possible toxicities, and possible resistance issues if I don't have to right now. On the other hand, I think if I should get ill I would be wondering why I waiting around.

My doc moved my appt to 4 months instead of 3. I did not like this as my last percentage was 20%. I felt I would only be comfortable going longer once I'm on meds and stable. I went ahead and did my bloodwork at the 3 month mark. I was going to call today to get the results, but then I started thinking my labs are going to be bad (always feel this way) and maybe I should just wait another month for that perceived bad news instead of dealing with it now. I felt there is nothing I can do about it now, so I may as well have another month to hear the news. Then, I felt that is stupid. If something was wrong, I should know now. So, I'll call Monday. And, I'm going to tell the doc that I want to stay at 3 month visits. He said if something was wrong, he would call me. Worrying about letting HIV go without meds is making me want to take the plunge sooner than I planned.

It's been six and a half years since I was diagnosed and am not currently on treatment. Mainly, because my results were pretty good for most of that time, though my viral load has jumped up and down over the years.

This last year, my CD4 counts have been going down and sit currently at 351. When I saw my consultant a few weeks ago, he did not think I should go on treatment and we've decided to wait until my next appointment on New Year's Eve.

In answer to your questions:Did you wait until the current recommended treatment guidelines or take a more proactive approach?

I've been aware (though not very thoroughly) of treatment guidelines and am aware that I am on the cusp of when I need to start treatment.

Did you wait until new/improved treatments came out?

Nope.

Did the presence of any OIs affect your decision or did you base it on lab results or a combination?

Not had any OIs really, so it has been led by my results.

If you started early, do you regret not waiting? If you started later, do you regret waiting too long?

Part of me does think I may have waited too long, as I am a bit fearful still about treatment. Recent reports that going on treatment can cause Post Traumatic Stress did chime with me, though that may just be me being a hypochondriac.

How big a consideration was the financial aspect?

No, am in the UK. Though might consider splashing out on some new clothes for the event.

Did you ever get a second opinion or consult another doctor before starting?

Not really, though I did change hospitals and consultants, because I was not happy with the service I was getting.

Were you recruited into a study (like START)

No, though I was reading about one recently, that did make me wonder if I should change to their service. I didn't.

...and any other factors that you used in making your decision.

My doctor is worried that I am not in the greatest of places and a bit low and may not adhere at the moment to the regime.

That CD4 # is excellent. Would you attribute your high CD4 to the fact that you started meds so early? What is your current regiment and have you had to switch?

Joe most likely didn't start "early"; with numbers like those he was likely to be hiv positive long before he tested.

Which leads me to say something that occurred to me about how your poll is set up.

You have a choice for people to pick when they started treatment soon after diagnosis, but you don't have any way to differentiate those who had obviously been poz for years (for example, diagnosed with PCP and 3 T-cells) from those who were diagnosed because they tested regularly and tested after a risky incident. In other words, those who were obviously newly infected.

Just because someone is newly diagnosed doesn't mean they're newly infected. Lots of people who start meds right away do so because they've been poz for years and just didn't know it.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

That's a nice color shirt Dr. Gallant is wearing in that article, don't you think?

Meh... I prefer to scroll down that article and look at the pickcha of our own Tim in a hoodie.

Logged

"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Joe most likely didn't start "early"; with numbers like those he was likely to be hiv positive long before he tested.

Which leads me to say something that occurred to me about how your poll is set up.

You have a choice for people to pick when they started treatment soon after diagnosis, but you don't have any way to differentiate those who had obviously been poz for years (for example, diagnosed with PCP and 3 T-cells) from those who were diagnosed because they tested regularly and tested after a risky incident. In other words, those who were obviously newly infected.

Just because someone is newly diagnosed doesn't mean they're newly infected. Lots of people who start meds right away do so because they've been poz for years and just didn't know it.

'how many years did you wait' supposes it's possible to decide on start of treatment which is not always a question of choice.

I had too start at that low a CD4 count, so it was rather 'immediately' than 'early' and absolutely necessary, too. The only thing I never understood was that in April 1996 I was negative, maybe it was a false negative. Anyhow, water under the bridge. CD 4's went up quite quickly, luck of the draw, I guess.

You most likely were recently infected when you tested poz, given that earlier negative. In fact, with the VL you had, you were probably VERY recently diagnosed as it's quite common for the VL to spike off the charts in the first month or so. With that much hiv in the system, it's not surprising that your CD4s were low as well.

If you had waited and monitored for a few months before starting meds, you most likely would have seen a decrease in VL and an increase in CD4s. That's how it goes in early infection.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Joe most likely didn't start "early"; with numbers like those he was likely to be hiv positive long before he tested.

Which leads me to say something that occurred to me about how your poll is set up.

You have a choice for people to pick when they started treatment soon after diagnosis, but you don't have any way to differentiate those who had obviously been poz for years (for example, diagnosed with PCP and 3 T-cells) from those who were diagnosed because they tested regularly and tested after a risky incident. In other words, those who were obviously newly infected.

Just because someone is newly diagnosed doesn't mean they're newly infected. Lots of people who start meds right away do so because they've been poz for years and just didn't know it.

Hi Ann,

Yeah I am aware of the ambiguity flaw in the poll but I did have a plan. I discussed the limitations a bit with some of the posters above. I couldn't at the time think of a way to structure the poll which would differentiate between newly diagnosed and newly infected seeing as many people might not know when they were infected. The goal was to get as much participation as possible to open up the discussion.

So I thought this would be a good way to open up the dialogue and get some ideas and considerations. So far the participation and feedback have been pretty good. Ultimately what I would like to do is take some of the discussion from the replies to the poll and make a second poll (part 2).

Lets say something like this: What were your top considerations in starting ARV treatment.Then they could select from a list of the top 10 most common considerations people discussed in their replies to this poll as to the factors they were considering when to start treatment. Then if I could allow a multi-select poll (not sure if this is possible), members could select the top 3 or top 5 factors that played a big part in their decision. However without getting the initial dialogue going, I would not know what these factors are. I took a guess and listed a few that came to mind but being a noob I really wanted to get feedback from those that have already been there. Thanks for the feedback and helping to ensure as rigorous a discussion as possible.

One of my best friends has gone 15 years without being on HIV meds -- seven of those years he had a hardcore meth habit. There's no rhyme or reason to this eternal question that appears on this forum. It is what it is.

Is he still alive and healthy today? Meth in itself takes a pretty hard toll on many organ systems in the body... The light that burns twice as bright lasts half as long.

Is he still alive and healthy today? Meth in itself takes a pretty hard toll on many organ systems in the body... The light that burns twice as bright lasts half as long.

I would caution against personal story any that goes "I/My friend/cousin/ex has gone X years without treatment and is doing great". It is as relevant as stories of 110 year-old women who attribute their old age to one glass of red wine a day (ie irrelevant) - the only thing you need to be concerned about is your own CD4 count.

I would split the decision into the following tree:

1) Start at ANY cd4 count because (HIV is damaging body at any count / don't want to be transmittable) or wait until currently recommended cd4 count 2) Use 500 or 350 as the recommended starting point

1) Start at ANY cd4 count because (HIV is damaging body at any count / don't want to be transmittable) or wait until currently recommended cd4 count 2) Use 500 or 350 as the recommended starting point

Those are certainly two good reasons for starting treatment but I suspect that those are not the only two that people consider in making their decision and I wouldn't want to limit it just to those two factors.

For example, several posters on here have commented that they has OIs or their CD4 was very low and thus they had no choice as when to start. What I would eventually like to do is learn what the top 10 considerations the real people experienced with this virus has used in their decision making process and then to see which are the most common.

Yes, he's fine. He got off the drug, went back to school, and is working on his second degree.

That is excellent news! I have a friend who is currently struggling with a meth addiction. I also know some guys who attribute their risky behavior (unsafe and indiscriminate sex) and subsequent HIV infection in part to meth. It's a huge problem is this part of the world right now (S.E. Asia) as is HIV. I wonder how much of a correlation there is there.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

My numbers were good enough that I waited about 7 years after seroconversion. However, after I had 3 sets of labs with cd4% of 16% I decided it was time to start. I also thought it would help with my skin issues, which it hasn't.

I decided it was time to start. I also thought it would help with my skin issues, which it hasn't.

What specific skin issues have you experienced with HIV? Two of my Asian friends both describe having major skin issues, not from side effects from meds but from the virus itself. They both had to go to dermatologists. One of them always had bad skin, serious acne before and the HIV exacerbated it . The other one said he never had skin issues before but after infection he started having all sorts of problems. I understand that rash is a side effect of some of the meds so when you started did your skin get even worse or did it just not get any better?

There's a huge correlation. I think there's been a study or two on the subject.

There was actually a documentary about it called "Meth". I've never done Meth but to hear it from those guys they got so horny that they didn't care who fucked them or how just as long as it happened. One partner wasn't enough either so at that point it's like playing Russian Roulette.

What specific skin issues have you experienced with HIV? Two of my Asian friends both describe having major skin issues, not from side effects from meds but from the virus itself. They both had to go to dermatologists. One of them always had bad skin, serious acne before and the HIV exacerbated it . The other one said he never had skin issues before but after infection he started having all sorts of problems. I understand that rash is a side effect of some of the meds so when you started did your skin get even worse or did it just not get any better?

Extremely dry flaky skin. This started well before meds, so it wasn't med induced. I consulted with an HIV experienced dermatologist, the first words in his report to my GP were something like "As you know, HIV infection causes many immunological changes..." Just something I've learned to live with.

Granny60

Started Meds 2 months after diagnosis after all genotype testing was in. Undiagnosed for years. went through 11 doctors and 2 hospitals who all kept saying the same thing. The reason I was dying and had become a bed ridden invalid was because I had to have some type of cancer and they couldn't find it. You don't want to know how many tens of thousands of dollars in biopsies and scans and tests I had. After a research hospital finally diagnosed me with HIV, I was told they never tested me because because I did not have any risk factors for HIV other than a blood transfusion 16 years before and only one in 400,000 get HIV from blood transfusions.

After a research hospital finally diagnosed me with HIV, I was told they never tested me because because I did not have any risk factors for HIV other than a blood transfusion 16 years before and only one in 400,000 get HIV from blood transfusions.

Really, one in 400,000 ? If you received your transfusion in the early 80s, in some countries that didn't screen their bloody supply, your chance was closer to 50%.

Anyway, given the current prevalence of rate of HIV (1 in 300 people in the US), I wonder how doctors could justify not testing you for all those other rare things, but not HIV.

Granny60

CDC web site used to list the chance of HIV infection as 1/400,000 for a single transfusion. I looked it up when I found out. a person that has had two transfusions the risk was listed as 1/40,000 and the risk continued to climb the more transfusions you had. I could never understand why the risk made such a change from first to second transfusion. doctors in our area have their head in the sand. People refuse to believe there are drug users, pregnant teenagers, homeless people..... the list goes on. PERFECT little small town ( backwards hick) denial mentality, don't you know.

You should know that the CDC used a single, discredited study for that number. I could go on, as I always seem to do

But if you want the particulars, I shall repost them.

Logged

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

Started Meds 2 months after diagnosis after all genotype testing was in. Undiagnosed for years. went through 11 doctors and 2 hospitals who all kept saying the same thing. The reason I was dying and had become a bed ridden invalid was because I had to have some type of cancer and they couldn't find it. You don't want to know how many tens of thousands of dollars in biopsies and scans and tests I had. After a research hospital finally diagnosed me with HIV, I was told they never tested me because because I did not have any risk factors for HIV other than a blood transfusion 16 years before and only one in 400,000 get HIV from blood transfusions.

I know someone with a similar story and we have some similarities. My parent's, who live in Indiana, have a neighbor who's daughter is gay. As it turns out, she lives right down the road from me here in Louisville. She is a teacher. My partner is a teacher. Her partner got HIV from a blood transfusion. They didn't know what was wrong with her for a long time, because she didn't fit any of the "risk groups". She is a lesbian and didn't do drugs. They finally tested her for HIV.

I have found it interesting that I'm gay and my parent's neighbor is gay and we now live within a mile of each other in a totally different city from our parents. She's a teacher with an HIV+ partner and my partner is a teacher with an HIV+ partner. I've been wanting to contact her partner to talk to her about life with HIV, but I'm not sure how to do that. They are about 15 years older and I believe she contracted the virus in the 80's, so she's been living with it for a long time. I've been told she's doing well considering, but I was told she can't keep up with her neg partner like she use to. They traveled a lot and have now cut back on that somewhat. Well, the main point is no one thought to check her for HIV for a very long time, because she wasn't a gay man or IV drug user.

Very interesting. I am curious about your history. What were your numbers like during the period you were a LTNP? How often did you get tested? What happened in 2005 that changed your stats from LTNP to indication for treatment- was it a sudden jump in your VL or crash in your CD4 or was it a slow progression towards needing treatment around that time.

Also, did you think that you might never need treatment or did you think that you were just a slow progressor that expected that one day you would eventually need treatment.

Finally, is there technically any difference between a Long Term Non Progressor and a Long Term Slow Progessor, have they identified any genetic traits or other characteristics that these individuals have or are they classifying based on lab result history?

There was actually a documentary about it called "Meth". I've never done Meth but to hear it from those guys they got so horny that they didn't care who fucked them or how just as long as it happened. One partner wasn't enough either so at that point it's like playing Russian Roulette.

Hey Hellraiser, any idea where I can get a copy of that movie or who made it? It sounds very interesting I would love to see it. I went poking around a bit but I couldn't find anything- Meth is such a common term.

Started the same day that I was diagnosed; about three weeks after being infected (and while still undergoing a very unfabulous seroconversion). I know it is not the norm, but I don't regret it one single minute.

Each person's experience is too unique and not really applicable to what others may be going through.

Wish I'd have had a crystal ball, I would have started immediately, too, Rev. Especially now after all of the data I've read about the establishment of the latent reservoirs that apparently starts upon infection.

I was diagnosed very soon after contracting it but decided to "wait and see" how my body adapted because I'd read the VL was usually extremely high at seroconversion but could be expected to decline rapidly in a short period of time. When it didn't, I started (based on current guidelines and Dr. recommendations).

btw: what are you doing with this information? Almost sounds like research

I started treatment a little over a year after being diagnosed. I was infected on April 9, 2005 and started meds in December of 2006. My declining numbers were the main cause. I remember my initial labs being Cd4 of 492 with a high viral load. If I remember correctly my peak in Cd4's was 600+, but it collapsed pretty fast. In October of 2006 my labs came back showing my Cd4's had dropped to 103. I think it was stressed induced really. I had a lot on my plate back then.

If I had it to do all over again I would have went on treatment sooner. I didn't handle treatment so well in the beginning, in my opinion, because I also had to take bactrim. The Atripla and bactrim together taxed my kidneys heavily and I was constantly having issues with some kind of levels, I can't remember now.

btw: what are you doing with this information? Almost sounds like research

I became interested initially because there is another user on this forum who's experience paralled mine. We were infected at the same time, we had similar lab results, we were of a similar age. He (and I) started doing a lot of research. His posts posts were articulate, intelligent and well argued. We came up with very similar information. A few month ago after reading a blog post by an MD advocating early treatment on another site he decided to start treatment. I remember reading the very same blog and was not at all convinved so I didn't and at this point our paths diverted. I started thinking about all the factors involved in making such a huge life altering commitment. I was curious so I made the poll.

At first I thought it could be useful for some sort of research however as several others pointed out, there is a flaw in the survey- namely that I did not design the poll to delinate between actual time of infection and time patient became aware of the infection (as many posters don't know the exact time of their infection).

So the goal then became to get a conversation going and hear about the wisdom and perspective of those who have been here before as well as that of the newly infected who are currently facing these decisions. In this respect I think the thread did pretty well.

Hey Hellraiser, any idea where I can get a copy of that movie or who made it? It sounds very interesting I would love to see it. I went poking around a bit but I couldn't find anything- Meth is such a common term.

I haven't started any treatment with regards to pills, IVs or otherwise prescribed things. I'm seeing a 4th specialist this week and I heard the term "controller" last week from the 3rd guy I had seen. It's pretty early on in my infection and my VL after 4 months was below 1000. If my next test is again below 1000 (and they're estimating it should be below 500 if the trend continues) then again no medication for me.

I've been trying to understand the concept of a latent infection and how HIV can "hide" and affect other parts of your system. A lot of scary shit out there, for sure, but so far my team of docs are 3 for 3 in saying that it's way too early for meds and that I'm not a good candidate for any therapy at the moment.

This whole subject of being a potential controller is interesting even though I need to be infected for a full calendar year before being officially diagnosed that way.

I haven't started any treatment with regards to pills, IVs or otherwise prescribed things. I'm seeing a 4th specialist this week and I heard the term "controller" last week from the 3rd guy I had seen. It's pretty early on in my infection and my VL after 4 months was below 1000. If my next test is again below 1000 (and they're estimating it should be below 500 if the trend continues) then again no medication for me.

I've been trying to understand the concept of a latent infection and how HIV can "hide" and affect other parts of your system. A lot of scary shit out there, for sure, but so far my team of docs are 3 for 3 in saying that it's way too early for meds and that I'm not a good candidate for any therapy at the moment.

This whole subject of being a potential controller is interesting even though I need to be infected for a full calendar year before being officially diagnosed that way.

Something that is getting attention right now in the HIV medical community is the concept that stopping/slowing the initial reservoir creation process may be a potential step for curing later on. I was infected for a long time prior to starting treatment so that information has not been welcome for me. C'est la vie.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I started about 5 years after diagnosis. I was diagnosed early on in my infection but waited until I got close to the guidelines to start meds. I started a little earlier based on what I read on here and conversations with my doctor. It has been about a year now and I was undetectable in a month after starting.

Saw my 3rd specialist again today. Drew 6 vials of blood for 6 different research tests (I consented). Won't get my november results back until next week but if my VL continues to drop and my CD4 remains around 750 or better, he is going to recommend my case to some studies even through by the book I can't be called a "controller" until after a year of near undetectable VL (or something along those lines, I'm paraphrasing). Had another genetic screen as well to confirm the last one.

But he again recommended against any meds at this pointand sent that message to my primary who agreed pending the outcome of the current blood tests. Keeping my fingers crossed.

Last I heard she still had T cells in the 1800 range with an undetectable viral load and no meds@! Someone needs to bottle whatever it is she's got. I want some of that.

Is 1800 CD4 cells desirable? That is our of the normal uninfected range (500-1500). If you go to far in the other direction then you run into problems as uncontrollable cell growth (cancer, specifically Lymphoma) and very high levels of inflamation from an overactive immune system. This might not be a desirable state either. Of course this might just her 'normal' for her immune systems as we are all different to some degree.

Having no viral load in the plasma is certainly a good thing however I wonder if the disease is somehow interfering with normal cell signalling and keeping the immune system (over)activated.

Is 1800 CD4 cells desirable? That is our of the normal uninfected range (500-1500). If you go to far in the other direction then you run into problems as uncontrollable cell growth (cancer, specifically Lymphoma) and very high levels of inflamation from an overactive immune system. This might not be a desirable state either. Of course this might just her 'normal' for her immune systems as we are all different to some degree.

Having no viral load in the plasma is certainly a good thing however I wonder if the disease is somehow interfering with normal cell signalling and keeping the immune system (over)activated.

She sometimes has reported T cells in the 1100 range, I'm not sure of her exact fluctuations but I do remember reading that they got as high as 1800. I don't think they're always at that level but you do bring up a good point that too much can maybe also be a problem, not necessarily in her case.

I believe there have been studies of elite controllers and of slow progressors that have found elevated inflammation markers , as is the case for most if not all others with HIV.

She sometimes has reported T cells in the 1100 range, I'm not sure of her exact fluctuations but I do remember reading that they got as high as 1800. I don't think they're always at that level but you do bring up a good point that too much can maybe also be a problem, not necessarily in her case.

I believe there have been studies of elite controllers and of slow progressors that have found elevated inflammation markers , as is the case for most if not all others with HIV.

Last year she told me she had over 2000 tcells - she is a mutant . And yes, there is inflammation even in HIV controllers.

nychope1

Hello folks... just wanted to chime in. My one and only blood work since testing positive two weeks ago came in as cd4 525 and vl 5200. I didn't do another test before starting on Atripla two days ago. I wonder if I should have waited a few weeks and have another blood work done. My doc is the head of the ID dept at a well known hospital in NYC and has been around a long time so when he said that if it was him he would start on meds I didn't hesitate. What ya ya'll think?

I became interested initially because there is another user on this forum who's experience paralled mine. We were infected at the same time, we had similar lab results, we were of a similar age. He (and I) started doing a lot of research. His posts posts were articulate, intelligent and well argued. We came up with very similar information. A few month ago after reading a blog post by an MD advocating early treatment on another site he decided to start treatment. I remember reading the very same blog and was not at all convinved so I didn't and at this point our paths diverted. I started thinking about all the factors involved in making such a huge life altering commitment. I was curious so I made the poll.

It looks like you were infected about a month before me. I started Atripla as soon as I found out I had the virus. I started getting sick (fever, night sweats, swollen lymps) and told the doc, you better give me a VL test instead of an antibody test because I think I'm in seroconversion. I was right and immediately, started taking the pills. A week later, all was normal, even the swollen lymp nodes were gone. But still it has taken me over 6 months to recover from that +10 million VL. Being a veteran I only pay a small copay for what I need through the VA. No dealing with wait lists and all that nonsense, so why not. Hopefully once ObamaCare fully kicks in, everyone in the US will have better access to the needed medications, either through Medicaid or whatever insurance plan you have.

nychope1

I think it's too late to back out now that you've made the decision and started on meds. Stick to them as prescribed and things should go well.

I suppose you may be right. For those who are new to this it is a strange thought having to take medication for the rest of one's life. Except for feeling slightly out of sorts the Atripla hasn't had any horrible effects on me thus far but it has only been two days. You can't help but think how long you could have gone without needing anything. Now it's a goal never have a cd4 below 500. It took getting this f'n thing to wake up. Please be careful out there... this is not fun!

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Granny60

I suppose you may be right. For those who are new to this it is a strange thought having to take medication for the rest of one's life. Except for feeling slightly out of sorts the Atripla hasn't had any horrible effects on me thus far but it has only been two days. You can't help but think how long you could have gone without needing anything. Now it's a goal never have a cd4 below 500. It took getting this f'n thing to wake up. Please be careful out there... this is not fun!

Lots of people take meds for something every day. diabetes, high blood pressure, can't stand the neighbor and her yappy little dog next door, you just get used to it. The great thing about starting early is that you are keeping your immune system and body from being trashed big time. Lots of us were totally trashed before we ever started meds. Your chances of having a great life without sucky things happening to you are now a lot better than a lot of us because of your early treatment. Good luck and I hope things keep going great!

what Gran said lots of people take meds every day. don't forget too those taking anti-depressants and anti-psychotics. I'm just glad that I don't have to stick myself and bleed several times a day like my friends with diabetes who test and inject insulin. Taking a few pills with dinner isn't such a bad thing when push comes to shove. It's a heckuva lot better than spending time in a hospital near death.

LOL what Gran said again. I recently got new results and for the third time in 20 years I had over 300 cd4s! WooHoo! of course it was only 308 but as long as their at 245 or more I'm happy. Having had single digits, just being over 200 is good news. Besides it's not necessarily how many you have, but how well they work. My average tcell count over the last 10 yrs has now risen to 184 with these >300 counts and has kept me out of the hospital for 13 yrs

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

Granny60

what Gran said lots of people take meds every day. don't forget too those taking anti-depressants and anti-psychotics. I'm just glad that I don't have to stick myself and bleed several times a day like my friends with diabetes who test and inject insulin. Taking a few pills with dinner isn't such a bad thing when push comes to shove. It's a heckuva lot better than spending time in a hospital near death. LOL what Gran said again. I recently got new results and for the third time in 20 years I had over 300 cd4s! WooHoo! of course it was only 308 but as long as their at 245 or more I'm happy. Having had single digits, just being over 200 is good news. Besides it's not necessarily how many you have, but how well they work. My average tcell count over the last 10 yrs has now risen to 184 with these >300 counts and has kept me out of the hospital for 13 yrs

Hey Mickie, Great to hear your numbers are that high now too. As you know, the longer you have had this crap, the longer it takes to get there. I'll bet you'll see a faster climb ^ now!

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nychope1

You guys have such resilience and positive attitudes. Congrats on the good numbers leatherman.I look forward to turning an attitude corner and start feeling mentally better. Three weeks into this and I am still quite run down mentally more than physically. And this Atripla is not helping much but it's only my third day. I think I'd rather just take a few more pills in the morning with my vitamins if this overall shitty feeling doesn't subside. I think it was a mistake to stay home this week to adjust... I am am better off busy at work.